Friday, June 27, 2008

Finally Seeing Rainbows...

I am hoping for a summer of lollipops wrapped in unicorns with rainbow centers. But it sure hasnt started that way. We are starting to see a light... some sun... coming through as each day is getting better for Miss Tottie (ie increased appetite, happier but still very sleepy for naptime)!

Yesterday was Remicade treatment day & she was Ms. Grounchy Pants slash Angry Old Lady more than normal because I am guessing she is still not 100%. Plus our usual bunch of nurses thought it was ok to take vacations or get married. What do you think this is SUMMER!? Cmon people! So Momma got a little short w/ nurses who wanted to explain things to a 2 year old & try and reason with her. More than a few times I had to say, "Just do it, & save the explanation, she's going to scream at you no matter what." Oye vey... explative explative explative.

So, labwork came back & Ped. Rheumy isnt happy with her liver. 2 weeks from now we will have labs taken again & will lay off the Methotrexate (which can play with the liver) until new labs come.

Ophthalmology appt as well - not so good. Right eye clear, left eye +1.

So I have letter off to Dr. Foster to get opinion: here's the letter:

Hello Dr. Foster, from the Pacific Northwest:
I wanted to give you the update on Charlotte & get your thoughts on the process of treatment. There has been a hiccup:

Charlotte
33 Months / Today’s Date: 6.27.08
Pausi JRA / Uveitis – Diagnosed in October 2007
Visited you in May 2008

Medications:
200 mg Remicade every 4 weeks
.4 ml Methotrexate SubQ weekly
Pred Forte topical / 3x a day / Dilating at night

Synopsis:

5.28.08 Opthalmology appt – both eyes clear. Tapered Pred forte from 4x a day to 3x a day. Dropped ointment @ night, keep dilating @ night.
6.15.08 Charlotte vomits / no fever / sleeps well
6.16.08 Charlotte runs a temperature, progressively gets higher as the day goes on. ER that evening - febrile seizure w/ 104.8 temp. Culture urine, blood, & spinal tap for meningitis. All negative.
6.17.08 Trip to pediatrician, still fever, recco is to stay on motrin every 6 hours
6.18.08 Vomiting, fever
6.19.08 Vomiting, no fever
6.20.08 no vomiting, no fever / Give Methotrexate
6.21.08 no vomiting, no fever
6.22.08 Vomiting comes back for one day / no fever
6.25.08 Pediatric Ophthalmologist: Right eye clear. Left eye 1+. Recco is to NOT taper Pred Forte, continuing taking 3x a day & see ped. ophthal. in 2 weeks
6.26.08 Remicade Day (4th injection). Converse w/ Dr. Daniel Kingsbury (Pediatric Rheumatologist) regarding results of labwork (please let me know if you would like these faxed to you):
SGPT / ALT 68 Normal Range 10-25 Units: U/1
SGOT / AST 45 Normal Range 20-60 Units: U/1
(also written on the prescription: ICD-9 7.4.32)
Dr. Kingsbury wants to hold off on MTX for 1 week, take labs again on 7.8.08 to see results before moving on with MTX that week.
7.08.08 Next ophthalmology appt / Take bloodwork to see if ALT is back in normal range.
7.25.08 Next Remicade appt (5th injection)

Moving Forward:
Dr. Kingsbury did not like the 1+ in the left eye & expects clear on 7.08.08.
If eyes are not clear, he recco’s going to 300mg of remicade every 4 weeks.
?: Is the virus to blame for her system being out of whack? No way to know or tell, just time will tell if she can get back on track.

Yes, it’s been a busy 2 weeks for Charlotte – hope this all makes sense! Please let me know if you want the labwork, if this is enough information & if you agree with the recco’s.

Thank you! Have a great weekend!
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Less than 30 minutes later (He continues to lead my "heroes" list) Dr. Foster responds:

I agree with what has been done, and the plans for going forward, i.e., increase Remicade, hold the MTX. The MTX may have to be ditched if the liver continues to be unhappy. Can either go it alone with Remicade or substitute something for the MTX such as CellCept. Keep me posted.
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If you have well children, go kiss them & appreciate their health! I will remind you of this again throughout the year!! :) Now I am off to make some new headbands - just got in 1/2" & 1" - loving the 1" :) More about my little side fun later (making bands for the cutey little girls in our town & giving proceeds to CARRA) :)

3 comments:

Lori said...

Thank you for reminding me to be so thankful for the boys being healthy! Hope you are enjoying the sunshine some and staying cool!

LEslie Bradner said...

I'm sorry Charlotte is having such a rough time right now. Hang in there with the positive thoughts. Hopefully good times are around the corner. You are in my prayers that things will take a turn for the better very soon!!

Lisa Milton said...

First of all: I was so glad I finally laid eyes on you today. You were just as lovely as I thought you would be.

(And I look forward to seeing you at the pool.)

Sorry to hear the liver tests were wonky. That stinks. I've had a few abnormal liver tests, but thankfully they were fine when I came back the next week.

She's in my thoughts. She's my secret little hero, when I am not feeling so great.

:)